Saturday, September 5, 2009

More known and unknown unknowns

First, some good news…

First, I found a job. It’s a “temp” job. Meaning, it’s through an agency doing contract legal work for a large firm in Richmond. It will likely be a 3-4 month project and I start next Tuesday (after Labor Day). It’s a start, and a foot in the door.

Secondly, I’ve decided to take the Virginia bar exam next February, which means re-taking the MPRE (ethics portion) and the MBE (multi-state portion) both of which I already passed with flying colors back in Massachusetts four years ago. Good news. I guess. Aggravating? Yes? A poor use of my time (and money) by the Virginia bar? Absolutely. But so be it. The ethics part is in early November so I’ll be doing a “warm up” over the next couple of months.

Thirdly and also in the category of good news is that Diane found a job too. She’s starting in a part-time capacity (24 hours/week) but will gradually move to full time by November or there abouts. Best of all, she will be working in her field (hospice). Her new employer is a recently established hospice agency so they are currently hiring her only part time because they’re in the process of building a client base. Their base has a way of dying off, then expanding, dying off and expanding – so it takes awhile to really grow. She’s very happy with the pay and people and starts next Wednesday.

So that was good news. What is the NOT good news?

Well, it’s not that it’s not good news. It’s more complicated than simple good or bad. Okay, it’s not very good either.

Bear with me while I try to simplify things. I feel a little like Donald Rumsfeld. (I hear your collective heads exploding and exclamations of “Good God Doris! That IS complicated! And very bad news. How did THAT happen?”)

Calm down. Let me explain.

Remember this infamous Rumsfeldian moment?

"Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns -- the ones we don't know we don't know."

Of course you remember it. I was going to say that I understand that statement now but really – he is an idiot isn’t he?

In fact I do now understand the notion of known unknowns and unknown unknowns as it applies to my current health situation. Let’s back up a bit.

In June, I didn’t know that there were unknown, unknowns. But I found out. I found out I had breast cancer and that unknown unknown became known. This is more trouble than its worth isn’t it? so was Rumsfeld.

Anyway, when an event like this happens, a whole new world of “unknowns” appears. A treatment team – surgeons, medical oncologists, oncology radiologists, social workers, nurse practitioners, and more - present a bunch of information, statistics, options, proposed treatment plans. Choices have to be made, none of them easy. Your team tells you all about “probable” outcomes. Side effects. Downsides. Upsides. Possible consequences. Risks. Studies. Clinical trials. Ongoing research.

We put together a treatment plan, me and my team, and embarked upon our little journey through unknowns. Then there comes a series of waiting. Waiting for appointments. Waiting for test and imaging results. Waiting for surgery. Waiting for the pathology results. Waiting to heal. Hoping to go on to the next stage of your plan.

Well things don’t always go according to plan. This was my plan:
1) Have a lumpectomy attempting to remove– lump(s); CHECK!
2) Check the closest lymph node to see if it had any malignancies; CHECK
3) If it doesn’t, go on to radiation
4) Pass Go, collect $200 and get on with your life maybe taking a little hormone therapy here and maybe some light radiation there - depending on the pathology of removed tissue.

Notice it sort of sputtered at about step 3? Here’s how it turned out:
1) I had the lumpectomy and had two cancerous bits (and a bit more tissue round about that) removed;
2) I had a single, “sentinel” lymph node removed;
3) All the tissue was tested – the lymph node was negative for cancer – hurray! (That we were told, generally eliminates the need for chemo);
4) The lumps were “technically” clear, but had narrow “margins” of cancer free tissue around it – but they were not wide enough to be confident that the team “got it all.”

So my surgeon said, “Come back to Boston, we’ll try again.” We did. Pretty much the same procedure as the first one, except no need to take any more lymph nodes – they were good little nodes, nice and clean even though they’d lived in my armpit all those years. Lymph nodes were now a known unknown. Or for us liberal folk that can’t stand Donald Rumsfeld, we now knew the nodes were good. Simpler hmmm?

But the original plan has gone awry. Among other things, because I was diagnosed 12 days before I moved, my original treatment team was in Boston, and I now live in Charlottesville Virginia. The surgeon who started with me is in Boston but I have begun assembling a “treatment team” here.

At Boston surgeon’s urging however, I return to Boston for the second surgery. Easy enough – a short flight, same-day surgery via the same incision site as before, re-excise a small bit of breast tissue around the very same area, a bunch of stitches, a patch of surgi-strips to hold it all closed, topped off with a nice, neat waterproof dressing and a couple of oxycodone on the side (yes, only a couple, I threw the rest out – too temptingly recreational to keep on hand). I headed home a couple of days later to wait – again with the waiting. Waiting to heal and await the results of the second set of pathology tests. And wait. And wait.

The second pathology tests are - again – technically just okay. The margins are still “too close.” (I later understand this to actually mean that they ran into NEW but “non-invasive” in-situ ductal carcinoma – but that’s a little technical for this discussion). It was too technical for me to understand from the surgeon's Nurse Practioner too.

Now, home and at my NEW oncologist’s consultation. And she is urging me to consider a third surgery. But this time I balk at the idea of going back for yet a third attempt at surgery in Boston. And now, for the very first time, I hear about the possibility of chemotherapy in addition to more surgery and radiation.

[The inside my head sounds something like this] “WHAT!? But the lymph nodes were clear!!! That wasn’t in the plan! That’s an unknown unknown! Foulball! That is not fair! Tossing that in the game when I least expect it!”

A little explanation: It’s the medical oncologists, or, as we professional cancer patients say, “med-oncs” who direct things regarding chemo-therapy and generally direct the follow up treatment following cancer surgery. Typically we also have radiation oncologists. If you are to do chemotherapy, it’s done first, followed by radiation if appropriate.

My Med/Onc is Mrs. Dr. Brenin. Oh hurray. FINALLY a woman is going to feeling me up on a regular basis! Honestly! Women-friends: if you are the even the least bit awkward or shy about having your breasts examined by strange men - and lots of them – try to avoid breast cancer. Especially at teaching hospital! Just have them lop the damn things off and have done with it.

[inside my head] Let’s listen a little closer to what the Med/Onc has to say. So whaaaah….? Wait. What are you saying? More unknowns? Known unknowns or unknown unknowns or what? More surgery? Again? Wait! what? Chemo?

[inside my head] “Calm down, calm down. Calm down dammit! Get a grip. Sit with it. It’s going to be okay. Another test? What? onco-what? Molecular? Genetic? Wait. Wait!! – this is not a known unknown ever known to me before. Not in the plan! What are you talking about? [re-focusing on Mrs. Dr. Brenin’s actual words…]

So here we go with the unknown unknowns again. Little did I know that tiny, young, looking, but very learned, sharp but personable Dr. Brenin was going to consult with all the rest of the team (including Boston team), look at all the rest of the tests, results, margins etc. before I ever got there and not only is she recommending another consult for surgery, she’s recommending chemo.

[me] “Oh f*ck! What are you SAYING?”

[Mrs. Dr. Brenin] Well, a third excision. Or maybe (I’m holding my breath) a complete mastectomy.

[inside my head] Oh for the love of god! This was definitely not in the plan. Totally an unknown unknown. Help! Help! Make it go away!

[Me to Mrs. Dr. Brenin, straight faced, calm, self assured] Yes, well I’m just not going back to Boston. Enough of that. There must be really good surgeons here at UVA (that's University of Virginia. oh! A momentary trip to tangent-land: I’m being treated at the “Emily Couric Cancer Center” – recognize that name? Couric… that’s right! like Katie Couric of CBS News infamy. Emily was her sister, Emily, who was also the former state senator from Charlottesville. died of pancreatic cancer a few years ago. Katie is an alum of UVA – who knew?)

[Mrs. Dr. Brenin] Why yes, as it happens, there are some really fine surgeons at UVA and one of them happens to be Dr. Brenin. That’s MR. Dr. Brenin.

Talk about keeping it all in the family!

[me, after quite a lot more discussion, to Mrs. Dr. Brenin] Oh. Okay. I understand. I think.

I’m not very much calmer but at least I have an intellectual grasp of what’s being proposed. Here it is: For people like me, with unclear surgical results following a second surgery and pathology tests that show MORE narrow margins – there’s a NEW approach for determining the likelihood a recurrence of systemic cancer.

Let’s back up a little. The whole point of hormone, chemo- and/or radiation therapy following a cancer surgery is to reduce the risk of recurrence. Radiation (and in some cases, hormonal therapy) is meant to prevent a recurrence in the localized area of the known cancer. Chemo is used to prevent a recurrence in a more systemic way because there is always the possibility that cancer cells migrated elsewhere even if they are not yet apparent. Thus, to determine if therapy should include chemo, the treatment team develops a statistical assessment of what that risk of systemic recurrence is likely to be.

Back in the olden days – about two years ago – there was a simple calculation that was done, taking into consideration about 7 factors, which they plugged into a formula, which in turn spit out a number. The number represents the statistical probability of recurrence. Pretty straightforward stuff. But it was not terribly accurate for every individual even though it worked for many. Doctors just didn’t know if many people who received aggressive chemo (with all the attendant side effects and risks) might just as probably NOT have had a recurrence anyway. Their non-recurrence may have had nothing to do with chemo. In other words, chemo might have been completely unnecessary or overly aggressive for many patients because there was no way to “customize” the test – assess each individual’s risk. There was only a “shotgun blast” approach. Killed cancer dead, but left lots of collaterally damaged (bald) walking wounded.

Luckily for me, some devilishly smart scientists came up with a brand spankin’ new means of testing each individual’s genetic code (your very own, one-of-a-kind tumor-tissue! freeze dried and chock full of your own DNA strands!) to come up with a much more accurate assessment of each individual’s likelihood of a cancer recurrence.

So this test, called an “Onco-type” test, is designed to help analyze “borderline” surgery/pathology results like mine to decide what the next plan should be. More specifically, if chemo-therapy should be a part of the plan.

[Heaves a sigh] Got that? Thank goodness for the google. Now I really DO understand. I spent a late evening with the Internet – my best friend – reading about onco-type tests and freaking out at the notion of undergoing chemo.

Thanks to cooler heads than mine (and you know who you are) I was promptly peeled off the ceiling and likewise not allowed to wallow in the shallow pool of self-pity for too terribly long. Instead we (Diane and I) went to the swimming pool that day and I immersed myself in a great novel (“Lil Bee,” by Chris Cleave). A really good plan for that day.

Many unknowns. And more waiting. But here’s what me and Mrs. Dr. Brenin have planned – together with the Mr. Dr. Brenin, surgeon and Dr. Read, radiologist:

1. Get an MRI – see if we can tell (without further surgery) if more surgery is appropriate. In fact, the MRI was done last Thursday. As an aside, it is a much more miserable procedure than I ever imagined. They forgot to give me earplugs. For anyone who's ever had an MRI with your head in the imaging tube, you can probably imagine why I would rather have been waterboarded. After doing that laying face down with my arms over my head for 40 minutes keeping perfectly still (a bit of a stress position for women that have just had breast surgery) and no earplugs. It feels a bit like being the clapper in a giant brass bell. Sucked to be me that day. Sucked more to be Diane who had to put up with me after.

2. Schedule surgical consult with Mr. Dr. Brenin – that’s on Sept. 14th unless he gets a cancellation sooner.

3. Research insurance coverage for onco-type molecular testing. It should be covered, but its expensive - $3000 – and best to be sure and check on the co-pay!. But then, I just got a bill for the slide prep, so I guess it’s going forward…?

4. If covered, get the onco-type test and expect results 11 days later.

5. Wait. Always the waiting. More freakin’ waiting! .

Now. Here’s the part that kind of has me not too terribly happy (on top of the damn waiting)

Even if there’s no further surgery, says Mrs. Dr. Brenin, based on the “old fashioned” calculation as to whether chemo-therapy is in order – chemo definitely IS in order in her opinion. The magic number is 15 or below. Mine was 25. Not good. But that number (risk of recurrence) can be greatly improved with chemo, hormonal and radiation therapy.

And now there's no stopping it. Not even in the doctor's office. No more straight faced. No more self assured. No more funny little asides to break the tension. The tears well up and spill over. Oh thank god for women docs! She just let me. Reached out and held my hand and let me cry. Handed me a Kleenex.

[sniffs, wipes her nose] But, says Mrs. Dr. Brenin, “you still have a 100% curable cancer.”

Here’s another way of putting it: the onco-type testing will really only be used to rule the chemo-therapy option out. If, by some magic surprise (a pony!?) my newest unknown unknown - my onco-type test - comes back with a good number maybe, just maybe, I can avoid chemo-therapy.

Mrs. Dr. Brenin is pretty unequivocal. Chemo? Pretty much plan on it. And with it, plan on losing your hair; plan on being kind of sick. Not debilitatingly so – but not much fun those days of treatment either. Four courses of treatments, three weeks apart each time. Not too bad. It could be worse. Oh and good news! My hair will grow back and it might be curly for a year so.

Have you been looking for an investment for that hopeless 401K plan that tanked last year? Buy stock in companies that make hats, people. Or scarves. Wigs? (though I hate those last two looks, probably hats). Looks like I’ll be buying them for every color in my wardrobe soon.

All kidding aside. I have to say this has all come as a tremendous shock. This whole cancer thing? It was supposed to be over by now. Or getting close to the end. I was extremely upset Monday. Then again upon waking very early Tuesday morning (as I do when I’m stressed) I cried as I ran my fingers through my already far too short, very sparse, baby fine hair. But each hour that goes by is a little easier. As the day goes on and the sun gets higher, I let go my fear inch by inch. Open flex one finger at a time and let my angry fists become open hands again. I can do this. I will do this. I have help. I will ask for it. I have each of you. And I have much, much more.

I’m still really quite okay. Not “sick.” Not in any pain at all (when not in the MRI machine anyway) and it’s really hard to tell that anything at all is wrong with me except for these rather silly little surgical scars (that are healing up quite nicely thank you). Except they keep telling me that I have this thing. This cancer. This malignant, yet sleeping set of cells that I have to keep at bay using some weapons of mass destruction: chemical weaponry, some rather sharp instruments and something a bit like, well, a death ray gun! The whole thing makes me tired just to think about it (and a little depressed at times).

But, for today - JUST for today - I bought more orchard ripe peaches up on Carter Mountain. The last of the season I think? I looked out over the orchard, down over the arbors full of black grapes shaded by bright green leaves - very near readiness on the vine; look down, down across the round, blue, cutout and shadowy shapes that are the Blue Ridge Mountains. I thought, life is still good. Just for today.

I hope yours is too.